Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group anyone have success

going back on a biologic after they have switched to another one?

I had amazing results for 1-1/2 years on Enbrel - worked wonders for my spinal pain & fatigue - less effective on peripheral issues (specifically my hands). Reluctantly switched to Humira last May because I was afraid to lose what results I was still achieving at that point from the Enbrel, but I decided to try it for my hands.

Humira was extremely slow to show results for me. Not as effective for my spinal issues & fatigue like the Enbrel, but I did have less problems with my peripheral joints once it did finally start working. And the results I did achieve with Humira were more consistent - I had a lot of ups & downs with Enbrel.

Long story short - I had an unusual reaction to my Humira shot on Feb. 7 and nothing has been the same since. I am getting no relief from anything I am currently on - Plaquenil, Sulfasalazine, and now my nsaid has been switched from Relafen back to Sulindac (am a bit wary - nsaids have caused me great issues in the past, but willing to try anything).

The fatigue is off the charts - my hands are a mess - I've wanted to post this for some time, but since I work on a computer all day, it takes everything just to be able to muster through my job(s), let alone do anything extra on a computer.

My rheumatologist told me she does have patients that are on Remicade without Methotrexate (which I cannot take), but has more success when the Remicade is given with it - the reason I haven't yet tried Remicade. Actually, she said she has had more success with her patients when they take Mtx with ANY of the biologics, but mostly with Remicade. But some of us just can't do it. Which makes me wonder if that's why these biologics are giving out so soon for me - although the studies I find to support the use of Mtx with the biologics are inconclusive and conflicting - at best.

So has anyone gone back to one of the other biologics after switching with any measure of success? Might Enbrel work again for me - any studies to be found to support if the drugs work again after being stopped & restarted?

When I felt the Enbrel giving out, it was more of a gradual thing.

This came on like a freight train - and I can't seem to find any way to stop it.

Janet,
I don't have any personal experience with the biologics, but I just wanted to tell you I'm sorry you are having such a difficult time. Hopefully, you can find some combination of medications that will give you some relief again.

Karen

Janet,
I'm sorry I can't answer your question, although I felt the same thing happen to me with methotrexate. One day I felt sick, had several hot flashes, and then felt horrible--and it lasted for over a month. The Dr. recently added Enbrel, and I'm still waiting... I was struck by your post, however, because you mention the trouble with your hands. I'm having the same problem (which worsened with what I call the methotrexate "crash"). I'm not happy to know that anyone feels the sort of pain that I do, but thank you that I know I'm not alone.
And you're not alone. You don't know me, but I honestly care about you. I'm sorry for your setback and pain. I'll remember you in my prayers.
--Dietrich

Hey Janet

I've been going to PM you.

The main reason for the Metho is so your body doesn't produce the antibodies against the biologics. So it's effectiveness will last longer.

At UCSF the Dr. said it's been long enough that I've been off Remicade I should go back on it and see how it works now. (It had stopped working as it once had) Maybe trying the Enbrel again would work?

Take care, will PM you soon. We are in the middle of the move! YEA!
Hugs, Trae

Janet,

I'm so sorry to hear you are in pain. I offer my experience because I was only recently diagnosed and so I spent the last 14 months thinking I was going to die from a disease the doctors could not figure out. So, before they knew I had AS, here is what they gave me to keep me "going."

I took 10 mg of cyclobenzaprine (a muscle relaxer) every night before bed. This would stop the muscle spasms and night time pain I felt, allowing me to sleep deeply for 8 hours. (That alone is magnificent, I never feel so close to insanity as when I am not sleeping at night!!) Then on really bad days the one pain med that worked wonders for me was hydrocodone 500mg. It would take away the pain, and yet I wasn't dizzy or tired with it. I could actually do dishes, laundry and sort of take care of my family. Awesome.

At my diagnosis appointment, the Doc knew he needed to buy me some time while they petitioned the insurance for Enbrel use and so he gave me a 120mg shot of steroids, the oil-based slow release kind. I know steroids are bad, but I was 98% free of AS symptoms the next morning when I woke up and it lasted 2 weeks, on the third week the fatigue returned but still no pain, and now I am on Enbrel and waiting for it to kick in. The only bad side effect I could "feel" from the steroid shot is that I had an extra menstrual period. I say "feel" because I know there are unseen detrimental effects of steroids. The Doc explained the difference between oral prednisone and the shot is that oral spikes your levels of ?cortizone? and the shot raises them fast and slowly they lower as it wears off.

My friend sent a card that said, "Like you need one more person telling you to hang in there......So I'll pray and ask God to remind you that his hold on you is secure."

This disease is horrible. No two ways about it. But I believe that God won't give us anything we can't handle. So in my mind I imagine all 6000 of us AS-er's as a giant Army of Strong Warriors because God knows we CAN handle this.

Take care. Be strong.
Donette

Thanks Karen, I appreciate your support - I know you understand how frustrating all of this is. I'm sorry to hear about your personal setbacks as well - I really do hope something good manages to come of all of it for you & your family.

Dietrich - my first joint pains were actually in my hands, almost 20 years ago, and my hands actually showed deformity rather quickly - a fact that doctors at Cleveland Clinic looked at me in disbelief about when I told them how long my hands have looked like this when they asked (at that point in time it had been about 15 years). They were amazed nothing had been (effectively) done to combat it. My hands kind of melted in to the background as I've had many other issues evolve since then. It's only been since my spinal issues became more controlled that the hand problems have reared again (I also have a particularly difficult-to-treat case of nail psoriasis - not pretty at all) - that not even direct steroid shots in to my nail beds have offered much improvement for. The one combo that did help was taking the Mtx with Enbrel - but my liver just doesn't like Mtx. Soon as that was stopped, my nails nosedived - as did my hands again. I'm sorry to hear about your pain as well - it helps having a site like like this that we can all share & sympathize with each other though.

Donette - Thanks for sharing your experience. I also use a muscle relaxant regularly as well as hydrocodone, but even that combo is far less effective than it used to be. My biggest issue with my rheumatologist is that she will not prescribe pain meds - I have to get them from my primary doctor, and she only does it selectively since she doesn't want to contradict my rheumatologist - not a good system at all. And you are so right - this disease is horrible. I thought I was doing pretty well a few months ago. I guess someone thought it necessary to remind where I've come from with this disease, and where I might be again.

Hi Trae - been wondering how the move was going - make sure you & hubby don't overdo too much - you want to be able to enjoy that new house when you finally get there!

Thanks again everyone - it means alot just to know others understand.

Hey Janet,
How goes things on your side of the creek?

I started off My biologic journey on Remicade w/ MTX. And slowly weened off of the MTX. Life was great for a couple of years, until my body started to build a tolerance to the Remicade. I continued to ride on a max dose of Remicade until we got Enbrel approved. Now for me it seems that Enbrel has had little effect. In reading up on the biologics, most of them do recommend that they be used in conjunction with MTX. In my case I could not tell any difference in the effectiveness of the biologic either with or without MTX. I haven't tried to go back to Remicade, but would consider it if it were presented to me.

I don't know of anyone that has switch and gone back to the original med but I know that several of us have stopped biologics for one reason or another and gone back on the same one with little or no change in theraputic value.

I hope that you find the relief you need.

Keep Kickin'AS
Chris

Hi Chris,

Well over here on my side of the creek the weather can't make up its mind - one day it's 70 & the next it's about 30 & snowing! It's been trying to rain - but it's been a dry year so far here. This up & down weather affects me badly anymore though.

I know you haven't had the results from Enbrel like you had hoped for - might there be a possibility they would let you try the Remicade again?

My other dilemma with the biologics now is my employer and/or insurance company decided as of Jan. 1 that neither of them wanted to pay for these drugs, so I've lost all coverage for them, so I'm getting the Humira provided to me by Abbott. I don't know if manufacturer coverage would be as successful with the other two???

I do know when I initially felt something going wrong in early February, I really just thought it was a temporary thing & I would bounce back since I had been doing pretty well.

I just never saw it coming this bad.

I had a terrible reaction to my first Humira injection after a year of Remicade. My face swelled like a balloon and my bp was 42/30. I was barely up. The dr. told me to NEVER take any more of it so I gave my friend $4000 worth of Humira and she is thrilled because it works well for her. My bp hasn't been the same since.
I really went down with my biologic experiences.
I can't take any of them any more so I feel like they have kind of written me off. Just prescribe more pain meds and PT. I guess that is all there is to do but it is frustrating.

This week my labs showed Protein and blood in my urine (still) and the kidney is enlarged. My liver is enlarged but the tests are ok. My thyroid med has to be increased by one half. I have an appt. with the Orthopod because I have Lymphedema probably from my shoulder broken down and not letting the glands drain. Good news! My A1C was 5.1 I am thrilled about that because they didn't think I could get it down on the steroids but I did.

My pain is out the roof and I can't sit and I can't stand and I can't walk and I can't lay. I just am in constant motion.

I would love to try another med but the dr. says "no" because he thought I wasn't going to make it as I got so sick with the MTX, Remicade and the Humira. My 2nd try at Imuran made me swell up like a balloon and I had taken it for years and stopped it for the Remicade and couldn't go back on it. The same thing happened with the Placquinil.

It's always something.

I hope and pray that you find something that will work for you.

Possi